Does anyone else deal with extreme fatigue?

[Southern Girl]

I sustained a TBI 15 yrs ago....I work as a pre-school teachers aide full time, I am married and have two daughters, 6 and 14.  I struggle everyday with fatigue, physically and mentally. Im always tired and could sleep forever. My family thinks im just lazy. :( Does anyone else struggle with this problem? Any suggestions?

[Kerry Mischka]

Barb,

To you and everyone else out there in TBI land.....can I just tell you all how much you all mean to me.  My husband can't believe how hard I am laughing while I read what you wrote back to me Barb.  You made my day!!!!  Just to add one more thing, I had my step daughters last night, so this morning while I was filling out a birthday card for my nephew so I wouldn't forget, the 10 year old looked at me when she wanted me to do something for her that was totally unimportant and said, "don't you have all day to get that done?"  The good Lord held me back from lashing out, but He heard what I was thinking in my head and He gave me a look on my face that made her realize what she had just said to me.

Hang in there everyone,

Kerry

[Karyn]

 

"My parents are the worst ones that make the most remarks to me about being Lazy and sleeping too much."

Boy did I snicker at that comment ! Parents are great I am so glad I still have them, but I think they are my worst hurdle. I try my hardest to avoid  discussing condition, which in my mother's mind does not exist. Because I always get "there is nothing wrong with you, we all forget things and have off days" I would like to list the things that I am dealing with regarding my TBI but it just isn't worth the depression that I go through after trying to talk with her. I get up at 5 in the a.m. and I am ready to go back to bed by 10 a.m. and if I could , if I was allowed by my husband, I could sleep for the rest of the afternoon, get up in the evening for 2 hours and then go to bed for the night… And it is REAL ! I am REALLY TIRED. I can't keep my eyes open.  I am not lazy.   It has been 10 months since my vehicle accident (going 70 on a highway, blew a rear tire and rolled 4 times)     I hope this fatigue is not something that is going to last, because I cannot handle the criticism from my family any more.              I wish you luck in your journey, Maybe this is all a learning experience, (life lessons) and maybe in our next life we will be Einsteins ! LOL  and invent / discover a way to treat  brain injuries so no one would ever have to experience the hardships that we are experiencing .   May you have light on your path.   

[Kerry Mischka]

Karyn,

Trust me, I am pretty sure that every one of us can relate to what you wrote about your family and being so tired.  Was your TBI considered severe...meaning, were you in a coma following your car accident?  It is difficult enough for us to accept the fact that our brains are injured let alone our family.  I must admit that I was in total denial for years and my accident was in 1997.  Most of my family is pretty much still in denial, except my mom.  She has stayed on my side.  However, I have problems with some of my sisters.  I have a great Christian friend and he is helping to walk me through it.  He explains why they react the way they do which has helped me tremendously.  Please remember that this is an invisible disability that the world just doesn't grasp.  Finally after 15 years, i was awarded disability which my mom thinks will start to affect my family in more of an accepting way.  More than anything, the people on this site will become your invisible best friends.  I don't even know how to put a picture on here, but maybe some day someone will teach me how.  We are all here for one another and we love you too.  People here have brought laughter back into my life, because they just "GET IT".  God Bless Karyn and if you ever need anything don't forget that you have a bunch of invisible friends that will not Judge you...at least I won't.  Good Luck and I think we are ALL on your side.  Kerry

[BARB GEORGE]

OH FOR THE LOVE OF GOD, FAMILIES OF TBI'ERS GET A GRIP!!!  Yes, I am SCREAMING HERE!!!  

I am sooooooooo angry right now.  10 months after a major accident (and coma does NOT mean a TBI isn't a life-changer!!!)?  And they are giving you grief Karyn???  OMGoodness!  I do not know how severe your TBI was, and honestly it doesn't matter.  Your brain is still trying to HEAL!  Push it too fast and too far too soon and you could very well create a system for another accident (as in my case) or keep your symptoms from going away longer!  Even my husband, who has had his jerk moments is more sympathetic (and he has Asberger's which means he has NO ability for empathy).  

I would direct your parents to this website.  Have them read a few notes here.  Have THEM write and ask questions.  If they won't, print this ____ out and wave it under their noses!  I am being very honest here.  

You can have these parents write me--if you would like.  My kids have all done stupid things-driven too fast, been thoughtless at times.  One of my son-in-laws has had an issue with tickets... dumb.  But I knew an accident that he had was NOT his fault as I knew his character has grown and changed... Even if it had been his fault, there is a point where the laws take over one side and the parentals need to focus on the healing.  Thank Goodness he was not hurt and no one else was either, but if they had been, we would need to get past that at some point and move forward.  As I said, you are welcome to have your parents write me.  I am nearly 8 yrs out...  I did NOT have a coma.  I have 'boxers brain'.  I fell a total of 5 ft.  My life is FOREVER changed.  Although, most cannot even SEE my symptoms.  

Gosh I hope they 'clue in' soon.  You need SUPPORT, NOT TAKEN DOWN.  

[ned bane jr., M.S.]

Yes and yes. I find it crippling. It has been a problem at work for me. I was nodding out one day in a group therapy session - and I WAS THE THERAPIST. It has also been a marital problem - those times when I just can't do anything but lie down. I empathize with your frustration in the family's lack of understanding. Familys just don't get good collateral information about the long-term sequelae of TBI. ... I run into the same thing with depression patients I treat. Families just think that they're too trifling to get up. They don't understand that the problem is organic not a choice. ... my best to you, ned b. 

[Kerry Mischka]

Loved what you said Ned...very true, but funny at the same time.  I'm sorry that I laughed, but after so long, ya just have to laugh.  It is especially funny that we all experience the same frustrations...amazing.  Thanks for what you wrote.  A truly refreshing story.  I tried to return to nursing and boy was that a mistake.  Actually, I tried to work for 15 years until I had so many different jobs that I finally had to concede to my neuropsychiatrists recommendation.  Thanks Ned- Kerry

[ned bane jr., M.S.]

My best to you. Laugh away ... can anything else possibly more therapeutic?

 

[Trina Bradlee]

I really relate to this! I am a much lighter sleeper now than I was prior to my brain injury, which was a complication of my third brain surgery to remove a benign tumor from inside the ventricles of my brain. I often wake up tired, or have trouble getting up. I have twin boys, nearly nine years old now, and they are learning to get up on their own, get their own cereal, get themselves ready for school. It makes me feel like a bad mom, or lazy...but I am just doing the best I can. It's odd...I was such an overachiever prior to my brain injury...and I, or we, as brain injury survivors, are always judging ourselves, trying to reach for our prior level...which is only natural, and there's nothing wrong with trying to get "back to normal"...but we also have to remember that the body and brain take time to heal, and allow ourselves that time...without "malingering"...I think most people try their hardest to do their best.

[BARB GEORGE]

Your story is awesome!  Thank you!  

I agree, sleeping is frustrating... And I know how you feel about wishing for our former selves.  It seems as though every time I try to do SOMETHING that I used to do, I go through another round of grief.  Oh well.  I am getting better at getting over it.  

You know, teachers can TELL kids who are self motivators.  They can tell kids who have chores at home... Those skills are HUGE!  So your 9 yr olds are gaining so much for their futures!!!  Also, the other things they are learning includes such things as:  Kindness, empathy, consideration, self-motivation not to mention organization, time management and I could go ON.  The skills learned at 9 will benefit them FOREVER.  Ask a teacher how they feel about 'helicopter parenting' and they will let you know just how horrid it is... One thing I would be sure you do, is let your kids educators know your challenges... not for sympathy, for any of you--but just for knowledge... 

I had a 15 yr old at home, and still feel some guilt that I was not as available to her as I had been... prior to my injury... but of ALL the people I know, she is the MOST complimentary and encouraging of my kids and family.  She sees the MOST improvement--which is SO cool now!!!  

You are AWESOME!

[BARB GEORGE]

By the way... I just had to send a message to my kiddo (the one I spoke of) to thank her for the blessing of HER. Thank you for helping me to remember those days...

[Trina Bradlee]

Thank you for your encouragement, Barb...I sure do appreciate anyone with positive things to say, especially anyone who has gone through things similar to my brain injury...it helps tremendously to know that there are others out there who have been through it...and who are continuing to get better...and carry on with "Life After Brain Trauma".

BARB GEORGE said:

By the way... I just had to send a message to my kiddo (the one I spoke of) to thank her for the blessing of HER. Thank you for helping me to remember those days...